“Tripod grip, honey.” Those three words became a constant reminder I would say to my older daughter, Brooke, as we sat down for her weekly kindergarten homework assignment.
Each weekly assignment was estimated to take 10 minutes, but we were lucky to get done in an hour. My daughter, frustrated, yelled one evening, “Mom, I can’t DO IT!”
I looked at her, trying not to burst into tears and said quietly, “I know.” I knew that her tiny fingers grasped in a fist around her pencil was not how she wanted to do her handwriting, and it was just something that, for whatever reason, she could not do. Her preschool and now elementary school teachers kept reassuring me she would grow out of it.
That night, I knew that she would not.
I just didn’t know what was wrong or how to help my daughter. It took another very difficult year and two therapists later before we knew the reason: Developmental Coordination Disorder (DCD). Specifically, “Diagnosis Code F82.”
Even after we had an official diagnosis from an occupational therapist and scheduled bi-weekly OT appointments for the next six months, I found very little information out there about this disorder. What I did find was overwhelming and usually followed by the last sentence, “Treatment can help, but this condition can’t be cured.”
Two years have passed since Brooke’s diagnosis and I’m happy to tell you that she is thriving and excelling in third grade. Yes, she still has DCD. It turns out that DCD is very common (one in every 18 individuals have DCD which is three times more than the estimate of an autism diagnosis) and it is often misdiagnosed or not diagnosed at all in childhood and continues into adulthood. DCD used to be called “Clumsy Child Syndrome,” which as insulting as that sounds, does have some truth to it.
DCD has no known cause and is a motor skill deficiency that is not related to a cognitive or neurological condition. Those with DCD can have issues in all aspects of a motor skill such as planning, execution and using feedback for correction. It is especially difficult for children who are just starting elementary school because there are challenges in dexterity so that writing, copying and even fastening a button can be difficult. DCD can affect balance and sensory integration, so sitting still for long periods of time can make a child tire easily; doing what is considered an “easy task” such as catching a ball can actually be difficult.
The bottom line is that motor skills literally affect everything we do. DCD is not a cognitive issue so my naturally bright daughter could not understand why certain things were difficult for her. Until we had the diagnosis, I did not understand what was wrong, either.
The wonderful news is that with occupational therapy to help strengthen her vestibular goals, Brooke was able to immediately improve her motor skills. Within two months, Brooke could hang and go across the entire length of the monkey bars on the playground and use a swing like her peers. She now holds her pencil in a tripod grip and will spend hours drawing and writing. There are challenges that come up frequently since new motor tasks require extra time to learn and she continues to go to weekly therapy sessions. My husband and I went through the process of putting a 504 accommodation in place for our daughter at her school and I frequently share new information I learn as well as Brooke’s continued progress at therapy with her teachers.
We no longer see DCD as a roadblock to her education or capability. Brooke has been able to guide me in what tools work for her, which is very rewarding and shows me that the time we devote to therapy and strategies does help with our long term goals for Brooke’s independence and growth.
It’s so important to celebrate each success of our children because it’s not always as obvious when progress occurs incrementally. Patience and trust are very important to the process of learning, something that I try to keep in mind as a parent.
I also found that connecting with other parents who have children with similar issues is extremely beneficial for me because we can share successful tips with each other and, more importantly, we share support. There may be no cure for DCD, but there are effective treatments and strategies to help compensate motor issues and improve strength so that the disorder does not pose significant challenges in daily life.
I no longer feel alone in my parenting journey with DCD and I love watching Brooke grow and continue to surpass expectations for motor skills. And no matter what, we are always going to support her and cheer her on, in every victory, big or small.